DEploying High ValuE LOngitudinal Population-Based dAta in Dementia Research (DEVELOP AD Research)

项目摘要 作为老龄化金字塔的正方形，医疗保健系统面临着前所未有数量的老年人， 严重的慢性病，不断上升的成本和可用的护理人员减少。这些挑战极大地 在阿尔茨海默病和相关痴呆症（ADRD）的背景下放大。与ADRD一起生活是 特点是身体和心理痛苦，病人护理目标之间的不匹配， 接受的治疗;家庭和卫生系统的身体、心理和经济负担沉重。 该计划项目，在痴呆症研究中部署高价值的纵向人口数据 （CIPAD RESEARCH），通过使用丰富的基于人口的数据来开发一个新的领域， 对痴呆症的全面纵向了解将更好地为临床和政策干预提供信息 并改善痴呆症患者及其家人的医疗保健。 方法上的限制限制了研究医疗、社会和文化之间复杂的纵向相互作用的能力， 已知影响健康、医疗保健和生活质量以及死亡的社会和系统因素， 痴呆需要招募足够大的样本来解释人群的异质性， 从不同护理环境中的患者和护理人员收集数据的必要性， 由于预算和初级数据收集工作的限制，卫生数据的社会决定因素， 超过标准5年补助金资助期的疾病持续时间限制了回答问题的能力。 重要的问题 健康与退休研究（HRS）和国家健康与老龄化趋势研究（NHATS）是 正在进行的NIA资助的基于人群的研究，包含丰富的纵向患者和家庭健康，社会， 和经济数据，并通过其与CMS索赔的联系，提供关于保健服务的全面信息， 利用率和成本。由于其成熟度、参与者人数、保留率、抽样框架以及 经过验证的识别痴呆症的算法，这两个数据集现在都能够提供足够的样本量， 变量和纵向随访开始，以解决痴呆症研究中存在的差距。编组前- 现有的资源和项目调查人员之间富有成效的合作，我们通过以下方式开辟新天地： 提出综合研究，探讨医疗、社会和系统之间复杂的纵向相互作用 已知影响痴呆症患者健康、医疗保健和生活质量以及死亡的因素。我们的五 研究项目解决痴呆科学中的主要问题，这些问题的答案需要使用 基于人口的数据现在可通过NHATS和/或HRS获得。我们的两个资源核心支持 每个研究项目所需的复杂分析，整合和协调研究活动，传播 研究结果和数据资源，包括编程代码和数据字典，创建一个研究平台， 支持早期研究人员，并确定未来的方向和研究合作。

PROJECT SUMMARY As the aging pyramid squares, healthcare systems face unprecedented numbers of older adults living with serious chronic illness, escalating costs, and reductions in available caregivers. These challenges are greatly magnified in the setting of Alzheimer’s disease and related dementias (ADRD). Living with ADRD is characterized by physical and psychosocial suffering, mismatches between patient goals of care and treatments received; high physical, psychological, and financial burdens on families and the health system. This program project, Deploying High Value Longitudinal Population-based data in Dementia Research (DEVELOP AD RESEARCH), breaks new ground by employing rich population-based data to develop a comprehensive longitudinal understanding of dementia that will better inform clinical and policy interventions and improve healthcare for persons with dementia and their families. Methodological constraints have limited the ability to examine the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. The need to enroll samples large enough to account for the population’s heterogeneity, the necessity of gathering data from patients and caregivers across diverse care settings, difficulties collecting social determinants of health data due to budgetary and primary data collection effort constraints, and a duration of illness that exceeds standard 5-year grant funding periods have limited the ability to answer important questions. The Health and Retirement Study (HRS) and the National Health and Aging Trends Study (NHATS) are ongoing NIA funded population-based studies that contain rich longitudinal patient and family health, social, and economic data and, through their linkages to CMS claims, comprehensive information on health service utilization and costs. Due to their maturity, numbers of participants, retention rates, sampling frames, and validated algorithms for identifying dementia, both datasets are now able to provide sufficient sample sizes, variables, and longitudinal follow-up to begin to address existing gaps in dementia research. Marshalling pre- existing resources and highly productive collaborations among project investigators, we break new ground by proposing integrated research that examines the complex longitudinal interplay of medical, social, and system factors known to influence health, healthcare, and quality of life and death for persons with dementia. Our five research projects address major questions in dementia science whose answers demand the use of the population-based data now available through NHATS and/or HRS. Our two resource cores support the complex analytics required of each research project, integrate and coordinate research activities, disseminate findings and data resources including programming code and data dictionaries, create a platform of research to support early-stage investigators, and identify future directions and research collaborations.